jonah

8 Year Old Boy Raises $800K For Rare Disease

Lisa Skrezec Charity Leave a Comment

While there are many negative stories floating around about the youth of our country, it is always exciting to come across a story that literally puts a smile on your face. An 8-year-old boy has raised over $800,000 for his friend who suffers from a rare disease. That headline alone made my jaw drop. Lora Purtnazarian and her husband Rabin must feed their son, 8 year old Jonah, a mixture of corn starch and water 10 times a day through a tube. Jonah suffers from a rare form of glycogen storage disease (GSD), a genetic condition that throws his blood sugar out of whack. This potentially fatal disorder demands 247 care — but you would never know it if you met Jonah.

Jonah’s best friend, 8-year-old Dylan Siegal of Los Angeles wrote and illustrated a book titled “Chocolate Bar”, in the hopes of raising money to find a cure for Jonah’s disease. To date, Dylan and Jonah have raised over $800K, very close to Dylan’s original goal of $1 million. Dylan’s mother asked him what he was going to do after they reached their goal, Dylan said “Well, we’re gonna keep going ’till Jonah’s better!”.

The money is funding research at the University of Florida led by Dr. David Weinstein, who says a cure for the disease is on the horizon. With the funds donated thus far, Weinstein and his team have been able to hire more staff, and they’re ┬ámaking key strides!

I was so touched by this story — it makes me happy to know there are kids out there that aren’t scared of dreaming big. Jonah did it, and I only hope ODS is able to as well! We have the potential to make a huge change in the way patients are managed — it’s already exciting to see our positive impact thus far!

Please feel free to read the full article on NBC News.

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